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1.25.2009

Thought that I would share more of what bedtime around our house has been like lately. We are incredibly blessed to have a three year old that, for the most part, enjoys her bedtime routine. I now wait to see if she will stay in her bed where we put her or wiggle her way out. Either way we win!

I am very excited that an award was bestowed to our blog. My amazing friend Brooklyn gave it to me. You can check out her blog here. I am supposed to put up some logo and pass the award to 10 friends. I am so sorry for not doing this, it is a little too complicated for my fragile mind. But we are grateful for the award and wanted to make sure to say a huge thanks to Brooklyn for it. Brooklyn and Kelly we love you and wish you didn't live so darn far away!

1.22.2009

I haven't been blogging much lately because I have been using all of my energy to communicate with several schools and all of Claire's various people. Today we had a very exciting day. She got to go back for her second day of school to Mount Hermon's Playschool. Playschool is a really neat preschool that has many fun things that Claire really enjoyed, mainly lots of kids. She had great fun playing with clay, watching the fish and hanging around the train table. When I went to pick her up she was beaming, she was so happy. We then got to take a break at home for a little down time and food before heading off to physical therapy. Sue our amazing PT could notice a huge difference in Claire's demeanor. Since she has spent most of the morning having fun and playing, her body was very loose. She was able to take several steps while holding onto a swing, a very unstable object. As we left Claire was so proud of herself for doing such a good job. I can't believe how hard she worked, but she was so excited to be able to put the pieces together and do it. She was really aware of where her body was and what she was doing. She knew that she was doing things that don't normally come. We came home, both of us exhausted from the rigours workout. I was surprised that she didn't crash in the car. When we got up to our place I laid her down, took off her shoes and read a story. Certainly, she was close to sleep. Imagine my surprise when I went in her room 45 minutes later to find her in her bed laughing and playing. We had a little talk about how exciting it was that she had such a great day and important it is that she sleep so that we can play later on when Daddy comes home. Amazing, after that she went right out. Here is a video of what I saw when I went in, before our chat. Thought I would get it on tape, in case I need to remember of great she is some other time when she is overtired and unruly.

1.16.2009

I think that it is safe to say that things have been a little more on the overwhelming side lately. January has a lot of volume of things happening for us, which is great, but it is a lot to manage. With so much going on, I have decided that I just might never be on time to anything, but I am not about to spend a bunch of time rushing around, life is just too short. Today was a full day, like most are. I worked from 4-7 in the morning, so I got a bit of a jump on the day. For the first time this year, Claire was actually a minute early to school, they weren't looking for us, as they have grown familiar with out five minutes late routine. Next we had a neurology appointment with Lucile Packard Children's Hospital, which is about a 45 minute drive. It was a miracle, somehow we got there 4 minutes early, we never get to doctors early. It was fun. Being late does not bother me, but it was fun to be on time for two appointments. By the afternoon, we lost the momentum, Claire's babysitter called to ask where we were, she got to the house 40 minutes ahead of us, you just can't win them all.

1.06.2009

1.04.2009

I was recently saddened as I read the pain that a friend of mine was going through. She too has an amazing little girl with Rett. The day came for her to go to the DMV and get her disabled place card. She described it as a hard, tear filled experience. Her blog was filled with comments from other families that too have taken that difficult trip. It got me thinking. Why is it that we view disabled people the way that we do? I thought about my experiences growing up. Honestly, I can't think of any with disabled people. I imagine that is the way many people are raised. Because it is something that is so far removed and foreign, we begin to view it as something bad. If I had a dime for every time I have told somebody that Claire has Rett and they respond with some sort of devastating reaction. I wish so badly that that wouldn't be so. I am so convinced that God has already and will continue to do great things through Claire, using her even the way that she is. Having a child with Rett Syndrome is definitely not easy, it it very hard. But it seems that to compensate for the added degree of difficulty, it is so much richer. I never would have thought to ask for this, for the "disabled for life" club, but I have to say, it has the most amazing members. I am grateful for this "frameshift" it has enabled me to see the world differently, using more of a panoramic type lens.

The picture is from Saturday, Claire has really taken to playing the Wii with her dad, she can't get enough!

About Me

Most of my time is spent getting to know our little gift Chloe and working to enable her big sister Claire. I love motorcycle rides with my husband and walks along the cliffs. I can't believe that God has given me so much, I am just trying to soak it all in.

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As defined by Webster:

or·gan·ic

4 a: forming an integral element of a whole :fundamentalorganic parts of the action — Francis Fergusson>b: having systematic coordination of parts :organizedorganic whole>c: having the characteristics of an organism: developing in the manner of a living plant or animal organic>

1ex·pe·ri·ence

3 a: the conscious events that make up an individual lifeb: the events that make up the conscious past of a community or nation or humankind generally4: something personally encountered, undergone, or lived through5: the act or process of directly perceiving events or reality